TBI S-O-S! Restoring a Sense-Of-Self after Brain Injury and Concussion

TBI Background and Info – The Toll It Takes

In terms of the personal toll TBI takes on lives, it’s hard to overstate the extent to which a brain injury can screw everything up. Your brain is the “central control” of your life, and an injury to it can seriously mess with every aspect of your life. Of course, since every brain is different and every brain injury is different, the effects on your physical, mental, emotional, spiritual, social, behavioral, professional, and every logistical aspects of your life are going to differ from others’. But without fail, a TBI does have some sort of impact or another.

The weird thing is, sometimes you can’t see it right away. Sometimes it takes days for physical symptoms like headaches or balance problems to appear. Sometimes it takes weeks or months. Some people see problems crop up, years on down the line. In a very real way, the brain is a “black box” that seems to have a life of its own, and science is quite a ways away from truly understanding it.

However long it takes, disruptions to your brain’s function can mess with your performance at work and your ability to maintain healthy relationships. Impulsivity and lack of a “filter” around what you say, can put people off and spark arguments – or worse. Getting bent out of shape about every little thing can make you difficult to be around, eventually making it easier for people to be away from you, than with you – and vice versa. Sleep disturbances may not seem like that big of a deal in the first weeks, but trust me – not being able to sleep past 3 a.m. for months at a time, does have an impact on your attention, your moods, your relationships, your ability to function, and your overall quality of life.

The disruption, I believe, is the most extreme in the cases where it’s not supposed to happen – with mild traumatic brain injury or concussion. After all, you just got dinged, so what’s the big deal? It was a bump on the head… or just a fender-bender. If you weren’t taken to the hospital – or you did go to the ER and were told to go home and rest and you’ll be fine – there’s no cause for concern, right? After a few days, you’ll feel better. A few weeks, at the most.

Right?

Most of the time, that’s the case. Around 85% of folks who sustain a concussion or mild TBI do feel better after a couple of weeks. But that means around 15% of us don’t. And then all hell gradually breaks loose. When you’re not aware of your issues, you can’t very well manage them, and TBI has a tricky way of hiding itself away. The brain thinks its fine. It’s totally justified in throwing fits, getting bent out of shape, losing its train of thought, and getting agitated and antsy when it’s tired. The brain doesn’t know there’s something amiss, and if you’re not aware that you need to take special care and give special consideration to the 3.5 pounds of gelatinous tissue inside your skull, problems can develop and evolve and ultimately spiral out of control.

For no apparent reason.

Professionally, you can find yourself marginalized and demoted. If you’ve started becoming emotionally unstable over minor details, and you suddenly can’t complete tasks you’ve been given, it wouldn’t be a surprise if that happened on down the line. You may find it impossible to operate at your former level because of headaches and sleep deprivation. You may find your temper flaring uncontrollably, your attention wandering, and your ability to focus gone-baby-gone. It happens with mild TBI and concussion. And the bitch of it is, very few people expect that. Because heck, you just got bumped on the head.

Relationship-wise, you can find that the people you once considered friends are pulling away from you, getting impatient with you, and not wanting to spend much time around you. At home, you may find yourself at odds with your spouse and kids more than usual. Out in the world, you may find yourself pulling away from others. It’s hard to engage with others when you’re not understanding everything they’re saying, thanks to fatigue and distractions and the additional work your brain needs to do to keep up with everything. You may also find others pulling away from you, as you aren’t the same fun-loving, easy-going person they once knew and loved.

Data collection and analysis of the toll that mTBI / concussion takes on lives is still in its infancy. After all, the scientific community at large has only recently realized that post-concussive symptoms are a “thing” which deserves study and responses from the healthcare community. Maybe it’s the development of adequate imaging technologies that show the actual activity of the brain around emotions, motivation, and a host of other aspects of life. Maybe it’s the dawning realization that the brain can indeed be studied, even understood – albeit slowly and with a hefty dose of humility. But scientific limitations aside, anyone who has struggled with ongoing difficulties after “just” a bump on the head, knows well enough what a personal toll it takes – both on them, and on the people around them.

Publicly speaking, TBI takes a toll as well. Studies have found that in the U.S. prison population, a history of TBI is 7 times greater than in the non-incarcerated population. According to a 2012 article in Scientific American:

In prisons . . . approximately 60 percent of adults have had at least one TBI—and even higher prevalence has been reported in some systems. These injuries, which can alter behavior, emotion and impulse control, can keep prisoners behind bars longer and increases the odds they will end up there again. Although the majority of people who suffer a TBI will not end up in the criminal justice system, each one who does costs states an average of $29,000 a year.

Crime rates and prison costs aren’t the only public costs of TBI. Domestic violence has been linked with TBI and concussion – both as an effect and a cause. Athletes with a history of concussion, according to a 2013 Toronto Sun article discussing Boston University study results, are more likely to become violently angry. That violence isn’t isolated to their own experience – it bleeds out into society and impacts us all, personally and collectively. Witness the very public domestic violence incidents involving NFL players, happening concurrently with the debate about the impacts of repeat concussions on players. Knocking out girlfriends, beating children, alleged murder. In a very public way, the violence on the playing field is carrying over to wider society, and those in the spotlight have jobs that have exposed them to frequent and repeated head impacts for years on end.

Suicide is another TBI connection that affects more than the person who takes their life. Former NFL players struggling with CTE have taken their lives – Junior Seau and Dave Duerson shot themselves in the chest,making it possible for their brains be studied for signs of CTE – and it was found. Scientists caution against jumping to conclusions that concussion and CTE fuel the urge to kill yourself, yet the correlation is hard to discount.

The connection between TBI and suicide among U.S. veterans has been studied in recent years, and a study of active-duty soldiers in Iraq in 2009 showed “that military members with multiple traumatic brain injuries are more likely to be at risk for suicide, not only in the short term, but throughout their lifetime.” Soldiers aren’t the only ones with suicidal thoughts after TBI, although the prevalence of suicide among veterans is frighteningly high. According to the American Psychological Association, in 2012, “the Pentagon reported an extremely grim statistic: In the first months of the year, a soldier was more likely to die from suicide than from war injuries. From early January to early May 2012, the suicide rate averaged nearly one per day among active-duty troops — an 18 percent increase from last year. Suicide rates among veterans are equally daunting. According to an estimate from the Department of Veterans Affairs (VA), a veteran dies by suicide every 80 minutes.” Suicide never hurts only one person. Friends and family and extended social circle are all harmed, as well. Again, numbers are fairly preliminary by some standards; the connections between TBI and suicide only started to be studied in earnest in the aftermath of the Iraq and Afghanistan wars, so there’s a lot we don’t know. What we do know, is that traumatic brain injury and post-concussion symptoms can be connected to changes in impulse control and suicidal thoughts. And that hurts us all.

The impact of brain injury on your ability to live your life to the fullest – or simply stay alive to see another day – is really just starting to be taken seriously. And it’s taken extreme situations to get people’s attention. The NFL and veteran warfighters are the obvious tip of the iceberg, with their almost universal appeal and importance to American society. But beyond the clear impacts of a life of tackling and being tackled and repeat tours of duty with multiple blast injuries, things get muddy and murky. And the impact of TBI / post-concussion symptoms to every functioning in the civilian and non-athlete population doesn’t always make sense.

It’s complicated, to say the least. Repeat blast injuries in the line of duty and countless concussions sustained in football practices and games, are one thing. But taking a tumble off a stepladder… getting hit on the head by a falling hatchback… or getting rear-ended during rush hour? How could they possibly make a difference to your overall functioning? Why wouldn’t those injuries simply heal up? I mean, seriously – how bad can it be? You just got hit on the head.

Right?

Not exactly. Even the best numbers can’t predict a correlation between severity of the injury and the outcomes. Some of us, regardless of the relative severity of our injury, struggle for years with our issues, unable to move forward except in small steps – which are often reversed by factors we can’t seem to predict or control. We see our primary relationships fray and fail. We watch our careers go into a tailspin and self-destruct for myriad “stupid” little reasons. We see our live savings dwindle in the face of ongoing medical issues and poor decisions. We embark on one attempt after another to make it all better, only to find ourselves floundering and exposed in the mist of a shit-storm we didn’t see coming. Slowly but surely, everything goes to hell. And a lot of folks who “should be fine” end up on the margins of society, disabled, homeless, slipping through the cracks or ending up in “state-sponsored care” in an institution of one kind or another – penal or mental.

It makes no sense. The severity of the initial injury doesn’t always match with the outcomes. Why does this happen? Why don’t people heal right away?

Obviously, it’s complicated, and there’s no one easy answer. Factors vary from situation to situation, from person to person. There are many experts who have theories and opinions and evidence-based explanations which range from neurology to biochemistry to psychology. And as many of them are probably as dead-wrong, as others are right.

From my own perspective of someone who should have been all better a long, long time ago – but just got worse – I have my own ideas. Personally, I believe that for some of us, TBI can start out as a complex logistical challenge and then become a chronic condition that’s fueled by a fractured Sense-Of-Self.

What starts out as a series of distinct problems can blur into a massive clusterfuck, thanks to the confusion and frustration that emerges when we don’t recognize ourselves anymore. Traumatic brain injury introduces changes to the brain that produce alterations in behavior and functioning, which literally turn us into a different person – temporarily or personally. Our traumatic experience of those changes feeds a biochemical bonfire that further morphs our changing neurology and biochemistry into someone and something new and different – and that difference can pose a very real and enduring threat to our self-concept and way of life.

TBI can screw with our Sense-Of-Self like nothing else. And when we find our identity compromised, it poses an existential threat on par with being chased by a saber-toothed tiger. The resulting chain reaction of fight-flight responses short-circuits our ability to learn and integrate new information into our world view and choices, which slows down the TBI recovery process. When connections in our brains are sheared and shorn, twisted and destroyed, our brains can recover and build new pathways. Neuroplasticity has been a known fact for decades (if not longer), and science has finally gotten around to admitting it exists, over the past years. The brain can reconnect in new and different ways, and it can re-learn how to do things it can no longer do with the old lost ways of connecting and communicating.

But you have to be able to learn, to do it. And you have to be able to integrate new information into the “mix”. You also have to be able to relax and get some rest, to refuel. The existential stress of living your life as a stranger to yourself, doesn’t help that process at all. And if you keep getting concussed (as so many of us do) but don’t get any help (as so many of us don’t), the additional cognitive and logistical load of adjusting to yet another change to your personality and Sense-Of-Self just makes matters worse.

Ultimately, the toll of an untreated mild TBI / concussion can really add up. There’s that inexplicable downhill slide that doesn’t make any sense to anyone. There’s the worsening moods, the nagging fatigue, the ongoing difficulties with things that others find so easy. Relationships fade away, career opportunities slip through your fingers, other opportunities come up that you don’t even see, because you’re so focused on just putting one foot in front of the other, or you’re too tired to notice it. Your health can suffer, with weight gain and additional conditions like clinical depression, panic-anxiety disorders, high blood pressure and diabetes. And you can see no easy way out… not even a hard way out.

And all the time, you’re wondering where the hell “you” went to? It seems like someone else has stepped into your shoes and is going through the motions of a life you don’t recognize.

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11 thoughts on “TBI Background and Info – The Toll It Takes”

Thanks for clear-headed article – living up to your name Brilliant. This is what people don’t understand – how we can seem very clever sometimes and then get thrown by ridiculously small things. Believe me, we are constantly surprised as well! I now understand in my situation it is because I cant arrange my thoughts, emotions and behaviours to fit what I know and would want to happen at the same speed as others. Thankyou for the way you described our experiences – the disappearing of others we thought were friends for life and so on is just about the hardest thing to accept. Ironically the judgement and unsympathetic attitudes of some can make us worse and confirm their stereotypes about us. Anyway BB, I just happened to see this video by Jeff Sebell yesterday and it also addresses what you so rightly say is our key issue – sense of self. People think you just just be mourning for who you were before, but Ive found the problem is no sense of any self at all so much of the time, just blankness. Jeff is 40 years in, and at 15 years in I found it very helpful to see someone further along the road giving some advice. Also BB thank you for representing the people who have received some ‘minor’ injuries over the years and found they came back to haunt you later on. here is JS video.

Well, I’m one who didn’t know he had suffered a TBI for about 8 weeks…and that’s because I was in the Neurosciences ICU or a rehabilitation hospital for that long. It was that long from the day of the accident to my very first cognizant memory. And after that I don’t know when my next memory was. I do remember asking to see someone in charge. I didn’t like having someone sitting in my room 24 hours a day, not being able to have the remote for the TV and not being allowed to have a Diet Pepsi. I was seen by a Dr but not until much later did I know he was a Neuropsychologist and not and MD. Oh well. The sitter was gone, I got the remote, and all my friends from work had been bringing Diet Pepsi…so there was lots. And I enjoyed it.

At some point, when I don’t know. I started pushing to go home. Same Dr came to see me. I demonstrated my ability to take a shower, sit on the toilet, and yup, I got to go home. My wife still says I should have stayed another month. She was not ready to have me home, working through her own injuries.

Sense of self. That’s a bit new to me, six plus years post TBI, but my take up to now has been that who I was, died that morning. who I am now, is still evolving.

Today I could say that I am the person that I was pre-TBI. But maybe not. I seem to be more creative now, In terms of solving complex problems in my own shop, yes I am more creative!!! And that’s a good thing. But I have experienced terrible issues with anger. Got too far gone a year ago and spent three days in the hospital on a Mental Health Hold. Best thing that ever happened to me!!! The staff Psychiatrist changed my anti-convulsive. The original gives the brain no time to “think”…I would just go into a full blown rage. She changed my anti-depressant…”that dosage isn’t worth taking.” I was discharged with a “plan” that included Anger Management classes, seeing a Psychiatrist, seeing the Neurologist regarding the changes in meds. All went very well. The changes in meds kicked in within a couple of days. I have to deal with anger far less frequently than I did pre-TBI.

Fatigue, yes, that continues to be an issue. An EEG done after a seizure a little over one year post-TBI found that one third of my brain is now scar tissue and there are five areas active for seizures. Ain’t that the pits!!!

So lots of reading on the web tells me that I may be able to do some of the same tasks I could pre-TBI, but now instead of using one part of my brain, I may be using as many as five parts of my brain. That’s how the “rewiring” inside my brain has taken place.

I do believe that I am able to “push” my brain to keep rewiring, or rewiring to do a certain task. I would love to know how that works, to be able to share how I’ve driven the rewiring, but I have no idea how it works. But it has.

I am in one way, so fortunate, if the accident had to happen, it happened three years before my planned retirement date. I supervised a great group of people. I had a great executive looking after me. I returned to work after six months disability. I worked the other two and a half years, and retired. I am also fortunate to have done my retirement planning and retirement is good.

I am so fortunate not to have lost my spouse due to the anger issues. Today we are very much in love and both of us enjoying retirement! I have only one complaint. Due to meds, anorgasmia…look it up!

Sorry if I have run on, but it just came pouring out…perhaps another of my missing “social filters”

All of this is very true. The mix of events creates a continual need for self-change and alteration of self-identity, occurring at varying stages of the tbi person’s life and is oftentimes causal to increased problems and anxiety that would manifest in a person w/o tbi, yet with a person dealing with tbi the problems inherent with the changes are exacerbated due to the openness with which we most often have to acknowledge ourselves amongst our peer groups, which then draws upon a social stigmatic recourse, existing out of our control.

These stigma, though veiled due to many etiquette rules or outright social laws that exist to curb their presence, operate inherently within the social circles and networks in which the person with tbi moves in, bearing witness to not only the operation of the myriad of stigma and the actors using them. The person with tbi is generally voiceless and powerless to do anything about the existence of the stigma, nor the operation of the actors and/or co-actors and confidants involved, without any alleged appearances of the potential for additional behavioral characteristics, with which the person with tbi may already feel accused.

Perhaps, in this regard, the tbi becomes a self-prophetic insanity of sorts? Wherein the person with tbi feels trapped, unheard, not necessarily chronically depressed, but without proper advocates in varying areas of life circumstances, the persons with tbi may choose to become removed from society at large, recognising they have already been removed from their originating personhood, by their tbi, and through the virtues of being watched by others as the gerbil-in-a-glass box per se?

If not one previous social contact would allow the person with tbi, to resume life with tbi in a slightly altered state but yet a acceptable social state and without judgement and stigma, how is it the person with tbi will be able to resume a healthy and life of normalcy? After all, nobody is normal.

Thank you for your words. I really relate to how judgment and unsympathetic attitudes of others can make us worse — and confirm their stereotypes about us. That’s how it was in my family. They didn’t know much about TBI when I was growing up, but constantly hearing how lazy and sloppy and deficient I was, just cemented my own experiences of being that way. Those moments when I was not at my best went from being temporary situations to being semi-permanent. They could have become permanent, if I had not gotten help, six years ago.

Thanks for the video. I am going to watch it now and post it, if it’s good. I have a feeling it will be.

What a journey. Lots of good in there, along with the difficulties. The whole “rewiring thing” fascinates me – I think it varies from person to person. Glad to hear your TBI did not cost you your marriage. That’s so important — for both of you.

That social stigma you mention is a pretty big deal. It’s probably the main reason why I moved on from so many jobs — either voluntarily or forced to leave. I always told myself I needed a change, but I think the change was forced on me by my TBIs. Looking back at my history, I see a pattern: TBI… then several months later leaving my job. Not only was it difficult for me to keep up, but it was hard to maintain the same working relationships.

I think the core issue around social fragmentation after TBI has to do with us going from “friend” to “foe” — I am thinking and writing about that in my book, and I’ll be posting about it within the coming days (or weeks). Social impacts after TBI are, in my opinion, highly important in the recovery phase, and they are not studied nearly enough — or maybe I’m not seeing them out there.

My solution has always been to take control of the situation and make changes myself. People failed me, so I ditched them. Trying to stick around and get them “on board” was too much trouble, so I just left and found new friends who knew me as the “new” me, not the “old” one.

Sense of self…is anything more nebulous — or central to personhood? The question, “Who am I?” is no longer rhetorical (if it ever was) — it becomes frantic, urgent. We become strangers in our own homes (“home” being, first, our being … and then our relations with others, and outward from there). I’m nearly five years out from an mTBI that was one of many I’ve sustained throughout my life, and it tipped the scales. Any injury/disease of the brain also becomes an injury/disease of that cipher, the mind. And I believe that nothing frightens us humans like deranged behaviour in ourselves and our fellow humans. There are so many avenues to derangement — injury, disease, poisoning (pollution; addiction), an overload of loss and grief, betrayal, exposure to/experience of trauma. Sanity is a fragile veneer, and a brain injury can bring about mayhem.

I’ve been surprised so many times about what’s come forth from myself (my self). Regressive behaviours, inconsolable grief, a loss of former abilities to self-regulate/-soothe (I used to be a psychotherapist so had lots of professional ‘tricks up my sleeve’). Where did those competencies go? Can I restore them?

Anyone else feel like something of their core being has been hacked away?

Who are we now? … A melting pot of surprises (in part). The strength, courage, and sheer cojones it takes to return from the dark night of brain inury — In my best moments, I admire my own capacity for survival.

I salute everyone here, everyone who’s been through this.

A brain injury is also an existential injury. No wonder the struggle and the agony (and sometimes, paradoxically, the hilarity! — My wit has changed, for example.).

Who we’ve known ourselves to be can change through any injury or illness — think of a pro athlete whose leg is broken beyond repair to its former function. Anyone who’s survived (e.g.) cancer (as I have) knows that the axis of their world is spinning now on a different axis.

And anyone who’s survived a brain injury … the magnitude of effect and change is almost beyond comprehension (no pun intended — for it literally is!).

Thanks for writing. I believe that actually, yes, the core of our being gets hacked away, when we sustain an mTBI. It’s all the worse, because it’s considered “mild”, and people definitely don’t understand the impact that even the smallest change in How we are, affects Who we are. And then we watch in dismay, as our brain produces behaviors and experiences that are completely foreign to us, or we’d trained ourselves out of, years and years ago.

It’s demoralizing. And until brain injury rehab people address the Sense-of-Self issue directly and proactively, I’m skeptical about how much progress will be made.

And yet, life goes on. The most helpful thing we can do for ourselves, I believe, is keep on keeping on… with mindful attention to what goes on in our lives. It’s exhausting, of course, so there’s only so much we can do. But over time, our stamina increases, we’re better able to identify patterns, and our systems normalize into certain repetitive reactions and experiences that re-make our selves.

And there we are. However long it takes, we can come ’round to ourselves again. We just have to keep at it.